Ethical dilemma over early detection of Alzheimer’s

By William Smith

When advances are made in medical diagnoses it can lead to many complex questions being asked. A new study suggests that advances in the medical diagnostics that can detect early stages of Alzheimer’s have left us with an ethical dilemma.

A report from the University of Pennsylvania asks: Do you want to know if you have early Alzheimer’s, or if you could find out your Alzheimer’s risk, would you want to know?  How should doctors tell you your risk?  And what does it mean for the many newly diagnosed asymptomatic Americans still in the workplace?

An additional problem is that, despite new technology that detects early cases of Alzheimer’s, no effective interventions have been identified to stop the progression of the disease.

The University of Pennsylvania debates the challenges of safely and effectively communicating a diagnosis of pre-clinical Alzheimer’s disease.  The study will appear in the journal ‘Neurology’ in October.

Recent medical advances will soon make it possible for doctors to inform patients that they have Alzheimer’s before symptoms start affecting their ability to function in daily life.

‘We need to develop systems now, to navigate the challenges of a pre-clinical Alzheimer’s diagnosis,’ said Jason Karlawish, M.D., author of the paper.  Karlawish is a leading voice on the ethics of Alzheimer’s.

‘It’s only a matter of time before we are able to identify Alzheimer’s before the patient is ill, like we’ve done ith cholesterol and heart disease.  Given the unique nature of this disease which strips people of their independence as the disease progresses, safeguards are needed to protect those at high risk or with a pre-clinical diagnosis,’ Karlawish said.

The wish to know individual risk varies greatly and similarly an individual’s reaction to learning that they have a high risk or early diagnosis in the early stages of the disease is also highly variable.

Test results can be harmful in some cases with patients developing anxiety of serious depression.  As a result of this Karlawish recommends that researchers and clinicians track the emotional and physical impact of a pre-clinical diagnosis.  They should then develop and disseminate the best practices.

A ‘National Alzheimer’s Education Programme’ is proposed to address how to translate research results into clinical practice for those with pre-clinical disease.

‘The Alzheimer’s disease label does not equate to disability, ‘ Karlawish said.  It is important to ensure that patients’ daily lives aren’t negatively or prematurely limited, laws and policies need to be revised to prevent stigma, discrimination and, when patients do suffer disability, exploitation.

‘The discovery of pre-clinical Alzheimer’s disease may be how we prevent the tsunami of Alzheimer’s disease dementia, but we must not drown in the challenges created by our own discovery,’ Karlawish warned.

Source: University of Pennsylvania School of Medicine